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2018 brings us to Trondheim, Norway! We’re here on a sabbatical for 6 months until July. For me, Christy, and Anders, this is a homecoming of sorts, as we lived here in 2004-2005.

Things are going well for our family. Nora continues to thrive and has integrated nicely into the local school. I’ve had some apprehension about living abroad with Nora: new foods, new routines, and away from our familiar foods and resources. And such a trip would have been unthinkable a few years ago. But we’ve adapted, and, so far, so good.

Disembarking the airplane with Nora in Trondheim, our new home for 6 months.

Trondheim in the evening light. It’s a beautiful city.

Snow! Still a novelty for Anders and Nora, as it rarely snows in Corvallis, and rarely enough for sledding.

First day of school. I was so impressed with Nora in her courage in starting school in a different country, away from her friends and her native language. The school was so kind about accommodating her.

We’ve also found the Norwegians to be very accommodating of Nora’s dietary restrictions. In general, they seem to very aware of gluten and peanut (and other allergy) concerns — we see it frequently on menus — so it’s been easy to extend that to Nora. We generally don’t explain the whole keto diet idea, but simply state that she must have reduced sugar.

At this point we’ve slightly liberalized Nora’s bread allowance, to the point where I feel comfortable with a limited amount of bread-heavy foods like pizza that come with a large dose of cheese or other fat/protein.

Nora prepares some hot chocolate: half cream, half whole milk, about a teaspoon or two of cocoa powder and a little bit of honey to taste.

Taking a break from skiing with a peanut butter and jam sandwich. We’ve found a great whole grain and seed bread at the local grocery storage with high fibre, high protein, and about equal amounts of net carbs and fat. With some peanut butter, butter and brown cheese, or with melted Jarlsberg cheese, it makes a good low-carb friendly snack.

Another day of skiing and a break at the ski cabin, which has a sitting/warming area and a cafe. We are enjoying waffles with jam and brown cheese. I can’t say this is terribly low-carb friendly. Well, let’s be honest, it’s not. But we try to load it up with as much fat and protein as we can. At this point for Nora I try to focus more on a healthy day-to-day routine, and trust that she has some ability to absorb the occasional sweet treat. Note, this is not acceptable when applying the diet strictly for seizure control. In that case, we feel strict consistency is extremely important; no cheating! However, with Nora now having almost 6 years of seizure freedom and several of those years off strict keto, hopefully we can trust she is solid.

Nora re-enacts a Say Yes to the Dress scene with Beanie-Boos.

Nora enjoys some fish soup way up north at the ice hotel in Alta, well north of the Arctic Circle. We took a trip up here to enjoy the arctic environment, visit friends, do some dogsledding, and stay in the Sorrisniva ice hotel.

Family portrait with the Northern Lights outside of the ice hotel in Alta, Norway. This was actually a pretty mild display. When Christy and I lived here in 2004, we were once treated to a phenomenal, otherworldly, indescribable display in Tromsø, Norway.

Some sort of winter Olympics-inspired event involving a duster. Nora has been happy and energetic.

She has adapted well to life here, as have we. The plan for now is to continue with a processed-sugar-avoidance diet for Nora, and hopefully she will continue to thrive!

Little Nora is not so little anymore. In June we celebrated her 9th birthday. We also celebrated by updating Nora’s epilepsy story to tell the story all the way to seizure freedom, so please take a look: Nora’s Epilepsy Story

She is healthy and doing well. In a few weeks she will head off with her brother to a 2-week Norwegian culture camp on the Oregon coast. This would have been unthinkable until only the last year or two. I’m a bit apprehensive, but she should be fine. We’ll send some snacks and meals for her, and trust that she’ll make good food choices.

For her birthday cake we enjoyed a delicious cake of Christy’s creation. It was the Chocolate Poundcake recipe, made into full double-layer cake instead of cupcakes. Everyone had a slice. The frosting was cream cheese whipped with a bit of honey and half-n-half to thin it. She specifically requested a pool of chocolate and a strawberry on the top, so we went all out with drizzling melted dark chocolate and cutting strawberries lengthwise to make hearts. For presents she was ecstatic to receive a Hermione wand (from Harry Potter) and a flute.

Nora is healthy and independent. Many keto kids fall behind on their growth, but at her yearly well-child check up she was holding steady at the 50th percentile for height, which is where she has been pretty much her whole life, and 37th percentile for weigh, so she looks long and lean. Maintaining a low-sugar diet seems good for her health overall, as she almost never gets a cold or flu. She wants to be a children’s author when she grows up, with a side-job as a substitute teacher when she is between books. She does have a flair for language and is writing Harry Potter fan fiction (no spoilers).

I don’t worry about her so much anymore, at least with regards to seizures. Well, I don’t worry perhaps, but I do still think about it from time to time. Once or twice a week when I’m at work I’ll wonder what she’s doing and if she is OK. I’ll still imagine that the phone might ring and it will be from her school. But then that doesn’t happen and I take a breath.

April 24 2017 marked Nora’s 5 year seizure free anniversary. We didn’t celebrate. Just a little high-five and the knowledge that life goes on, more challenges lay ahead, and an appreciation for moments of simple happiness.

Nora’s period of seizures lasted only about 18 months total. From a few tonic-clonics in the fall of 2010 to a horrendous period of myoclonics in the fall of 2011 to eventually getting her seizure free in the spring of 2012. I estimate she had something like 10 tonic clonic seizures, but she had at least 1,000 myoclonics, and probably several thousand more that we didn’t document.

On one hand 18 months doesn’t sound long, but anyone that lives with epilepsy knows it brings life to a crawl. You are always on guard, always waiting for the next seizure to come out of the blue sky. The fall of 2011 felt like a lifetime to me.

Nora doesn’t really remember any of it. She asks what the seizures were like. She knows that her diet and a period of seizures are part of her identity, but she does not remember.

I can see now that we have been unlucky and lucky. Nora was unlucky to have to deal with seizures. She was unlucky to have epilepsy. Unlucky to have a nasty epilepsy. Unlucky to have a refractory epilepsy.

But we were lucky that the ketogenic diet worked so well. We were lucky to pull her back from the edge. We were lucky to have the dedication and resources to apply the diet strictly and completely.

My heart breaks for people still looking for answers; still looking for their good luck after the bad luck. Please hang in there. Please keep going. Things will get better.

Nora is doing well. She is a very normal kid. She attends a dual language school (English/Spanish). She likes math when phrased as silly word problems I challenge her with when we hang clothes together, but can get frustrated with the notation and worksheets at school. She has many good friends. She loves to dance and perform. She has very good pitch when singing, even though she hasn’t had any voice training. She plays piano, reluctantly. She listens to countless audio books. She has grown tall and lean and — surprising to us — recently shown running aptitude: she has a runner’s gait.

Her diet is still restricted, but only a little. Our only remaining rules are that she not have any refined sugar (no soda, no candy), limited bread, and that any fruit be balanced with a roughly equal amount of cheese or nuts (by volume).

We’ve actually gone out for gelato a few times this summer. When I first had the idea for it a few weeks ago, I checked with Christy to see if she felt comfortable with it. When we agreed, I suggested it to both kids. Nora was ambivalent, and responded with “but we’re out of my ice cream,” referring to the coconut ice cream she was anticipating that we would bring with for her to have while everyone else had gelato. I told her “no, you get gelato too.” Those little moments are nice. She licked her bowl clean.

She’s waited patiently for five years.

(A few days later one evening she suggested with as much casual indifference she could manage “Maybe we can go downtown and have dinner and then have gelato. If you want.”)

I will always be grateful for how Nora has embraced the diet’s role in her health. She is so responsible and so thoughtful about it. To our credit I think we have always been very open with Nora about the benefits and challenges of the diet, so that we can sympathize with her when she is frustrated, and celebrate with her when she gets to exchange Halloween candy for toys.

Practically speaking, Nora still has the same breakfasts and lunches as she has for years. Breakfast is our special granola (Nora’s MAD About Granola) with half and half. Lunch is Mission low-carb tortilla roll-ups with turkey and cream cheese, some nuts or cheese, and some fruit. Dinner is very often Mission tortilla quesadillas with cheddar cheese and avocado and carrots. Her main treat is Coconut Bliss chocolate bars and Coconut Secret coconut bars.

For now, I am thankful for these routines, and this quiet anniversary.

(P.S. As I write this, Nora and Anders are on the trampoline. It’s 9:00 PM on a dusky warm spring night. Anders is explaining to Nora how evolution works, and using Nora’s epilepsy as an example of mutations.)

Wow! It has been way to long since I have posted something on this website. A lot has happened in our life in the past year. We had another baby, Jaron hit the 2 year seizure free mark, was weaned off his diet, and celebrated another year seizure free. I plan on writing about all these events, but for now here is a post that I had been meaning to post a year ago.

It is not unusual for Keto Kids to struggle with stomach pains. My stomach would probably struggle with trying to digest that much fat, too. Jaron started having stomach issues within the first month of being on the diet. But we worked with his dietician and were able to keep it manageable over the past 2 years. If your keto kid is struggling with stomach issues, here are some options you can discuss with your dietician.

Make sure he has regular bowel movements. Jaron’s stomach pain in the first month was due to irregularity. It took us awhile to find the right amount of Miralax to keep things flowing, but not flowing too fast. After a couple of months we found the balance and that helped his stomach out a lot.

Make sure he isn’t getting too many calories. After we got the pooping situation under control, Jaron was still having some pain. The dietician noticed that Jaron was gaining weight too quickly. She suggested go down on his calories to see if the reason for the stomach pain was a belly that was too full. Sure enough after we went down, the stomach pain went away.

Smaller Meals more frequently. After about 6 months, the stomach pains came back. Our dietician suggested giving Jaron smaller meals. The smaller meals would be easier on his stomach to digest. This was more work for me, since I had to make more meal, but it helped his stomach.

Sugar Free Tums. Another 6 months later the stomach issues came back. Dr. Wray suggested Sugar Free Tums as an antacid. We only wanted to give Jaron one a day so we gave it to him in the evening when his stomach was most upset. This helped him sleep better at night. If you get a yummy flavor, this will be a treat for your keto kid.

Probiotic. Jaron was on the Tums for a while when he started having kidney stones. The dietician thought we should discontinue the use of the Tums because maybe Jaron was getting to much calcium which aided him forming kidney stones. To replace the Tums, she told us to give Jaron a probiotic. She suggested the brand Culturelle as it has minimal carbs. After 3 days on this, Jaron’s stomach pain went away and we haven’t had issues since. I guess his digestive system was running low on good bacteria at this point.

There are many options for helping keto kids deal with stomach discomfort. If yours is struggling, I hope these ideas help you and your dietician come up with a way to ease the pain.

The end of summer is upon us; Nora and her brother will be starting school this week, with Nora entering the third grade.

It’s been a good summer. Nora has been healthy and happy, enjoying countless hours listening to audiobooks and setting up playdates with friends. Last April we quietly celebrated four years of seizure freedom, and about two years on a reduced version of the ketogenic diet. For the last year and a half or so we’ve been estimating Nora’s portions, focusing more on limiting carbs and matching carbs with fat and protein in proportions roughly equal by volume. For example, if Nora wants some fruit, we ask her to eat an approximately equal amount of cheese or nuts (she usually prefers cheese.) Ideally we’d be at something like a 1:1 ratio, which would be close to a MAD diet, but I think many days it is probably less than that and something more like a low glycemic-index diet.

We’ve felt more comfortable traveling. We took the train back to North Dakota — a nearly 30 hour ride — to visit family this summer and had no trouble feeding Nora with a combination of carefully selected retail food or foods we brought with us.

For a fun treat we’ve recently found the “Coconut Bliss” brand of ice cream, which is around a 1:1 ratio. Nora loves it, and I admit I feel a great delight in allowing her to enjoy an off the shelf ice cream product without much restriction. It has 17g of net carbs per serving, which would have been much too high to fuss with back when Nora was restricted to 10 g of carbs per day, but now I feel comfortable with her having it due to the 19 g of fat that goes with it. (As an added bonus, it’s made nearby by a Eugene, OR company.)

Nora has grown tall and strong, with absolutely no signs of any growth delay she may have had while on the carb and protein restrictions. As I type this, she is swinging and climbing in a small tree in our backyard, like the primate she is.

Cognitively Nora is sharp and very strong with language; she has a very large vocabulary and greatly enjoys mystery books and theater. She speaks well and reads well. She’s a natural organizer.

She does struggle with certain abstract concepts, such as music notation, analog clock reading, and mathematical procedures. Of course these are not unusual struggles for any kid, but I would say Nora seems to struggle just a little more than average — whatever that may be — with these sort of abstractions. I wonder sometimes if these minor struggles are related in any way to any cognitive delay that would have been related to the epilepsy, as myoclonic epilepsies are usually correlated with cognitive delays or regressions. But I feel there’s really not much evidence of that; it’s quite likely that Nora is just a very normal kid with some strengths and some areas to improve. Watching her develop I’ve never lost the gratitude that she is doing so well. I will never take her health for granted.

It was about one year ago I wrote a post about Caring for the Caretakers. Nora’s epilepsy really took off in the fall of 2011, so I think I associate the fall with those difficult times. This fall I find myself thinking of it again, about our journey and also about those that are still struggling or will soon be sent tumbling down that path. So again we want to remind our fellow parents and families that you are not alone. Epilepsy can be so difficult, and scary, and unfair. It is OK to acknowledge how hard it is, how scary, how unsettling, how frustrating, how limiting. When we are hurting, we must take some time to acknowledge our pain, and also to have our community and supporters acknowledge the pain.

To all the parents and caretakers and families out there, I say: I am so sorry this has happened. I am so sorry this unfair and scary thing has set upon someone you love. I am sorry it hurts. Cry and rage if you need to; give yourself space to acknowledge the hurt.

When you’ve had time to be with your pain, pick yourself up and put one foot in front of the other. Keep going. Each difficult day you make it through is one less you’ll have to deal with. If you are in the midst of a miserable time, remember that it will not last forever, there is a better day out there in your future, for you and your child.

We are here to help. Please leave a comment if you need an encouraging word, or a space to vent. No one is alone in this.

Nora is 8 years old! She had a fabulous birthday celebration with friends. Her artistic side is shining through, with musical theater as her birthday party theme and top summer activity. With a little moxy and a lot of help from our friends, we pulled off an impromptu version of Suessical the Musical, with Nora playing Gertrude McFuzz and singing the songs herself. Her birthday wish came true and she was fabulous!

The birthday week also brings check up time: we paid a visit to her regular pediatrician, who finds Nora in perfect health and 50th percentile in height and weight. The keto diet did not seem to slow her down after all of those years. We also visited the dentist who gave her a clean bill of dental health. Back in the keto days she got several fillings, which I still wonder about–could it be that her saliva was more acidic like her blood at that time? Because it certainly was not related to sugar consumption!

Nora is now over 4 years seizure-free and it has been about 1 year since she officially moved on to the Modified Atkins Diet (MAD). She still eats like she is on MAD, but we don’t weigh or measure food. Our new rule is to restrict all refined sugar and carbs, which is how we should all be eating for health anyway. As a matter of fact, it’s how our whole family has learned to eat – almost, her 11 year old brother doesn’t restrict himself in all settings – but at home we eat whole fruits, veggies, nuts, eggs, meats and dairy.

This Chocolate Poundcake recipe has been our go-to cupcake recipe for about a year now. I make a big batch and frost them with cream cheese whipped with a drop of vanilla and a splash of cream, then freeze them for birthday parties. I also make sure to keep several in the school freezer for those days when a classmate brings in a treat. Nora’s teacher sends her down to the teacher’s lounge to take one out of the freezer in the morning, then she’s ready to celebrate with the rest of her class when they have a special treat at school. These cupcakes are moist and chocolatey, just as rich and delicious as a cupcake should be.

The MAD version is 1.45:1 ratio, but topped with whipped cream cheese the ratio is even higher – which is great! To make the keto version with a higher ratio, I have included substitutions and nutritional facts below. We’ve also made these in other flavors, for example, omit the cocoa powder and add bits of raspberries for vanilla-raspberry muffins. Use your imagination! This recipe was adapted from The Joy of Gluten-Free, Sugar-Free Baking.

Preheat oven to 350 degrees and set out 10 silicone cupcake molds on a baking sheet.

Mix together the dry ingredients–almond meal, protein powder, baking powder, salt, cocoa powder. The almond meal can be clumpy, so break it up and mix well.

In a separate bowl (your stand mixer, if using one), measure the eggs, vanilla and milk (or cream, see below). Mix on low to combine wet ingredients. Meanwhile, melt the butter in a microwave-safe bowl, then add the honey to the melted butter and combine. Add the butter and honey to the mixing bowl and combine with the eggs and honey. Then add the dry ingredients to the mixing bowl and mix on medium for 1-2 minutes, until well combined.

Scoop batter into 10 silicone muffin cups (49 grams each). Bake for 10 minutes, then rotate baking sheet and cook for another 10 minutes, until a toothpick comes out clean.

For the keto version, substitute heavy cream for the milk, and stevia for the honey (liquid stevia will go in with the eggs, cream and vanilla, powdered with go in with the dry ingredients). With those substitutions, each cupcake will have 47 grams of batter, 2.9 g carbs, 6.5 g protein, 19.2 g fat, for a ratio of 2.04:1. Use your favorite keto frosting to bring up the ratio of the whole treat.

Nora and her prosciutto-pear pizza with olive oil and mozzarella, crust made from a Mission Carb Balance tortilla.

How did 2016 sneak up on us? I have been meaning to write an update for months, but busy family schedules just kept pushing it back. It’s also a case of “no news is good news,” because Nora is happily humming along with her Modified Atkins-style diet, growing and learning and being her true self.

In our last diet update about 9 months ago, we were still holding carbs to 40 g per day and weighing carb foods on the gram scale to make sure that we were not exceeding that limit, but allowing unlimited protein and fat and not calculating the ratio anymore. Now we are not weighing anything (except for making a few recipes where I still find it easier to weigh than to measure in volume, but it is rare).

We are thinking of this as the long-term maintenance phase of Nora’s diet and have taught her to eat by a simple rule: If you have a sweet food, like fruit, match it with a protein/fat food, like cheese or nuts. We are so fortunate that she has made her food choices part of her identity. I don’t worry about her cheating when she is out of our sight. She goes to friends’ houses to play and I know she will make good choices. She is making new friends and I realized that I forgot to tell the parents about her diet limitations on the first visit. We are also fortunate that we live in a time when people are very sensitive to food allergies and don’t question food limitations, and sometimes even ask up-front.

Nora was Pippi Longstockings for Halloween! She has a flare for drama and adventure! The Halloween Fairy took away her candy and left her a “horse head on a stick” (Nora’s words!), now named Eponia.

Nora still does not get foods with added refined sugar or other starchy foods, like crackers. Gluten-free is a good rule of thumb, but many gluten-free foods are full of just another kind of starch and are not a good choice, and conversely, her low-carb tortillas do have wheat in them. A rule of thumb that I follow for meal choices is to look for paleo products and recipes because they tend to be lower carb, while still reading labels. We are also fortunate to live in a time when there are so many healthy low-carb options at our fingertips.

Nora still feels like she is on a special diet, just a bit, but because of the many special diets in the world she doesn’t feel like such an oddball. I still make fancy cupcakes and store them in her school’s freezer in the teachers’ break room, so that if the class has a birthday celebration she has something special too. She doesn’t seem to mind at all and had one last week–the only evidence I had of it was the wrapper that came home. I send along a treat to a birthday party, or pack extra healthy snack for her and friends if they have a playdate. For her birthday, we made 3-layered fruit popsicles for her backyard pool party with no added sugar. We are finding lots of things that work for everyone now that her diet is so much more relaxed. Nora’s food is still part of daily life, but it is much easier than before and the rest of life has taken over our time and energy.

She also has very fond memories of her special diet. Just last weekend, she took the KetoCookbook off the shelf and was reminiscing about foods that she wants to make again and wanted to try some recipes that we had never tried! That book was such a gift to us when we first started. I remember lying in bed with Nora after we got it, looking at the pictures of the food that we could make on her special diet. She could imagine pretty delicious things and be excited about food.

One new recipe that Nora and friends like is this Paleo Lemon Bread, adapted from Good Morning Paleo by Jane Barthelemy. I picked it up at the library–it has several good ideas for breakfast and lunch. This comes together quickly in the food processor, but you can mix by hand as well. They freeze well so we make a big batch and take them out as special snacks for a trip or outing with friends. She is still devoted to her MAD About Granola with half and half for breakfast, which is one recipe I still make religiously, twice per month.

Preheat oven to 325 degrees. If using mini-loaf pans, line with parchment paper. Or set out 24 silicone muffin cups to bake.

Place almond meal, baking soda and salt in food processor, pulse to combine. To measure the coconut butter: it will be solid at room temperature, so scoop out to measure by weight, or melt it by warming in the microwave or in a bowl of warm water to measure out 3/4 cup. Add to almond flour mixture and combine well. Add eggs, again pulse to combine. Measure the remaining liquid ingredients in a separate bowl (it can help to warm the honey also), and add to the food processor. Combine all into a thick batter.

Bake in 2 mini-loaf pans 20-25 minutes or in 24 muffin cups for 15-20 minutes. Remove when slightly brown and a toothpick inserted in the center comes out clean.

If you want to reduce the carbs, reduce or eliminate the honey and add no-carb sweetener. You can also add a few berries to each muffin before baking for an extra pop of flavor.

We just got back from our annual camping trip with friends. We had a lot of fun swimming in the lake, playing with frogs, and watching the annual Perseids meteor shower. Our family has always loved going camping. Both of my kids always slept better as babies in the great outdoors then they did at home. Two years ago, when Jaron started on the diet, we had to make a decision to continue camping or wait until (hopefully) he would come off the diet. The diet is time consuming and you need just the right ingredients to make it work, so taking it to the great outdoors seemed like a daunting task. Jaron loves to camp so we decided it give it a try.

It turned out that most of the hard work was done before and things went very smoothly once we were in the great outdoors. Here are the steps we take when going camping.

Choose a campsite that fits the needs of your keto-kid: If your kid is still having seizures, pick a campground that is flat and doesn’t have a lot of uneven ground so if he falls there aren’t a lot of obstacles for him to hit. You also want to consider what kind of amenities your campground has. You can go rustic with just a water pump or a place with showers. We have camped at both and I must say it is easier to have a place with running water for washing keto dishes. If you have a camper (we tent camp) this may not be an issue.

Choose your menu: We choose meals that can be put on a plate with minimal to no weighing involved. Meals we have taken camping are:

-Muffins (Christy has several good ones to choose from on this website)

Prep your food before you leave: If you have a camper you may not need to do this because you have a sink and counter space to make the meals. We tent camp and pulling out all ingredients and utensils to make a meal on an uneven picnic table (if there is even a picnic table) and then having to wash all the dishes seems exhausting and a waste of a good camping trip. So I choose to make my meals ahead of time. I spend a long 4-6 hours before we go camping putting together all the

Here is a small sample of what I made. I put all his food in containers and then in ziplock bags so water from melting ice doesn’t leak into the food causing it to get soggy.

meals. That’s enough meals to last us 4-5 days. The prep time done before we leave makes feeding a keto kid in the woods stress free. When it is time to eat we just pull out a pre-made meal and lay it on a plate. The only weighing we do while camping is the heavy whipping cream Jaron needs at breakfast and before bed to take his supplements.

Experience Tip 1: Make the entire meal in one plastic container. Use silicone cups to separate the wet ingredients. Then make sure you lay them flat in your cooler so they don’t spill onto the dry food.

Tip 2: We put our plastic containers in zip lock bags so they were extra protected from the melting ice water that could leak in and ruin a meal. This happened once. It made an unhappy keto kid.

Tip 3: Make an extra day’s worth of food so you can focus on cleaning up the camping gear and getting back into the swing of things before having to keto cook again.

If you are considering taking your kid camping, I hope this post helps you make that dream possible.

“In the event of a sudden loss of cabin pressure, oxygen masks will automatically descend from the ceiling. Grab the mask, and pull it over your face. Fasten your own mask before assisting others.”

I want to write about what the caretakers, the parents, the loved ones, feel when our children are affected by epilepsy. My goal here only to relay what it has been like for me, in the hopes it is helpful for someone. It seems each caretaker responds a bit differently to this situation. For me the experience has been, at its worst, highly emotional and exceptionally difficult. In the most difficult times, I greatly depended on hearing the perspective of others who struggled too.

Epilepsy is terrible. Seizures are terrible. They are frightening, disruptive, and can be dangerous. They are a demonstrative indication that something is wrong. Part of me hates them. I hate the way they look and sound. It connects to some very primitive part of my brain — probably the same part that recoils at the sight of blood, or a grotesque injury, or the macabre — that says “something is very wrong.”

Nora’s seizures were the most difficult thing I’ve ever dealt with. They triggered a primal response within me to defend her. I felt as though she was under attack, that there was a monster with her or within her. I would daydream that I could make the monster real, something I could see or touch, something I could pitch all of my fear, anger, and frustration against. But I couldn’t do anything for the seizures but wait and watch. So I took data; lots of it. I recorded the number of seizures she had in the morning, afternoon, and evening, as well as the medication dosages, how she slept the night before, whether or not she had a nap, what foods and supplements she had. I made models of pharmacokinetics to estimate how much medication she had in her blood at any hour of the day. I ran regression analyses to try to determine correlations to seizures with any of those factors, even including some time lag factors. At the end of each day I updated my plot of the number of seizures per day. Data keeping was a way for me to feel like I could do something.

One of the most challenging aspects of adapting to the new reality was that it was always changing. It was a roller coaster. First there was the shock of the initial tonic-clonics, then a period of hoping it was an isolated incident, then the disappointment of their recurrence, then the appearance of the myoclonics, again the hoping it was isolated, then learning about the terrible prognoses that myoclonics can signify, then an improvement in seizures as we changed medications, then a steady march of the myoclonics’ reappearance and worsening. Each brief period of relief and hope dashed with growing evidence that this was not going to be easy, that Nora may be impaired, that we will have to adapt to life as parents of a special needs child. I’m not a superstitious person, but I began to feel that to dare to hope or smile was just to invite the pain of falling when those hopes were dashed.

Mornings were the hardest. I woke up each day on the edge of tears. I would lay there in bed, waiting to hear Nora’s feet on the floor as she walked to our room to cuddle with us for the 15-30 minutes or so before we got up. The daily seizure count started almost immediately. As Nora laid with us, she would typically have 1 to 3 myoclonics. Time to get up. My feet felt leaden. “One foot in the front of the other” I told myself so many mornings. I trudged to the kitchen to put the tick marks on the refrigerator whiteboard, already anticipating if the daily seizure count would be above or below normal. If the trend was down, or up.

I was teaching a course that term — power electronics. I remember many mornings standing before my students as they chatted with each other in the minutes before the start of lecture. I would have my face down, pretending to read my course notes as I fought back tears. Take a deep breath. “OK class, let’s get started…”

I started to break under the constant pressure and stress. The first and only genuine panic attacks I’ve had in my life started coming. I remember one morning when she was a few weeks in on the switch from Keppra to Depakote. As we made the switch, her seizures dropped dramatically. She even had a few seizure free days. But then they started back. A little bit more each day. This was the most devastating time for me. There was no sugar-coating it: it was very bad news to have the myoclonics marching back through the new drug. This particular morning I was getting ready to leave and happened to glance over at her as she played near the couch, just in time to see a myoclonic. I felt the rush of hormones; the involuntary chemical cascade that tightened my chest and made me feel nauseous. I remember pacing back in forth in one spot and clenching and unclenching my hand. I felt like I was going to pass out. I felt uncomfortable in my skin.

I started to find it hard to be around Nora. Of course I loved her as much as always, but I just couldn’t handle the seizures. I would eat dinner standing in the kitchen instead of sitting with Christy, Anders, and Nora at the dinner table, as the dinner table seemed to be a prime time for seizures. Christy started to feel the stress of my stress too. So I started to branch out. I got much help from my other family friends, and I also started going to see a professional counselor to help me with anxiety management. Another excellent resource that really helped me was Michael Koskie’s book “Diet for Seizures,” which discusses his family’s use of the Modified Atkins Diet for their daughter. He has a section in the book on the emotional impacts to the parents that was very helpful.

When we switched to the diet and Nora improved, it brought me the much needed time and space to heal. There are still times when I feel the anxiety and fear come back, particularly if Nora is twitchy in her sleep, or if she is sick. But on the whole I’ve gotten much better, although it has taken a lot of time and persistence.

So we want to say to those whose hearts ache for their children and the uncertainty of their well-being: it’s going to be OK. Even if you don’t see how right now. Trust me. You are going to be OK. Your little girl or boy is going to be OK. It might seem so hard and scary right now, but it is going to get better. That doesn’t mean there won’t be more challenges or more seizures, or that it won’t take a while more. But it will get better. Keep going. Breathe deeply and keep going.

Misc words of wisdom:

Kids are really, really tough. They don’t feel sorry for themselves. They just keep going. Take inspiration from their energy and happiness even in the presence of seizures. I remember being with Nora in the emergency room between tonic-clonic seizures (she had one about an hour prior, and there was one coming in just a few minutes, although of course I didn’t know it) and she was examining my cell phone with such interest. I felt sad and scared, but she didn’t care that she had just had a seizure. She wasn’t sad or scared. She was being an inquisitive child, as always.

Each hard moment you make it through is one less on your path. Your child is going to have X number of seizures between now and seizure freedom. Each seizure means there is X-1 left. Each day you make it through brings you and your child closer to better medical knowledge of epilepsy diagnoses, causes, and treatments.

It’s OK to be angry, sad, and scared. Stop and cry and when you need to. When it is time to get going again, put one foot in front of the other. One day at a time, one hour at a time, one step at a time.

Use your friends and family to give yourself breaks from epilepsy care. It doesn’t mean you won’t stop worrying or constantly checking your phone, but it will do you good to get out of the house and in the company of others (e.g., your work, your friends, your hobbies) for a while.

Though it can be hard, be grateful for what you can. It can always be worse.

If you have a partner or spouse, recognize that sometimes the stresses of epilepsy will stress your relationship too. Take care of each other.

Go see a professional counselor. Your medical plan may cover it. A counselor will be able to hear you out and share specific stress management techniques that your partner may not. Counselors helped me with anxiety management.

Your child’s condition is not your fault, nor anyone’s doing. Human physiology is complicated and messy and sometimes things go haywire. What’s happened has happened and that’s that. There is no meaning to it. Having kids is tough business. We have no guarantees on their safety and well-being. When we have kids we take our hearts and put them outside of our bodies, at the mercy of entropy and the unknown. All you can do is the best you can do to care for them and love them.

Keep going. Breathe and keep going.

Any words of wisdom from other parents and those affected by epilepsy are most welcome in the comments.

Meta

About the Brekkens

Nora had her first seizure in 2010 when she was 2 years old, then developed myoclonic seizures in 2011. After 2 antiepileptic drugs failed, she started on the Modified Atkins Diet and gradually moved to a ketogenic diet. She has been seizure-free since April 2012 and is now back to a Modified Atkins Diet.

Christy and Ted Brekken maintain this blog to chronicle our story and reach out to other families with children who may benefit from the ketogenic diet. We also facilitate a support group through Doernbecher Pediatric Neurology, OHSU, in Portland, OR.

About the Swicks

Jaron started having seizures in 2011, just before he turned two. After trying 3 medications while having over 200 seizures per day, his family heard about Nora's story and went to Doernbecher Pediatric Neurology for help. Jaron was immediately diagnosed with Doose Syndrome and started on the ketogenic diet with a hospitalized induction. He has been seizure free since November 2013 and completely off antiepileptic drugs.

Amanda and Jason maintain this blog and a support group through Doernbecher Pediatric Neurology to reach out to other families using the ketogenic diet to treat epilepsy.